GENEWATCH
 
HOW ART AND LITERATURE CAN CONTRIBUTE TO GENETIC POLICY
By Lori Andrews
 

A few years ago, a boutique opened in a trendy shopping area in Pasadena, California. The store, Gene Genies Worldwide, said it offered "the key to the biotech revolution's ultimate consumer playground." Its products were new genetic traits for people who wanted to modify their personalities and other characteristics.

The store was filled with the vestiges of biotechnology-petri dishes and a ten-foot model of the ladderlike structure of DNA. Brochures highlighted traits that studies had purportedly shown to be genetic: creativity, conformity, extroversion, introversion, novelty-seeking, addiction, criminality, and dozens more.

Shoppers initially requested one particular trait they wanted to change in themselves or their children, but once they got into it, their shopping lists grew. Since Gene Genies offered people not only human genes, but ones from animals and plants, one man surprised everyone by asking for the survivability of a cockroach.

The co-owners, Tran T. Kim- Trang and Karl Mihail, were thrilled at the success of their endeavor, particularly since none of the products they were advertising were actually yet available. Despite their lab coats, they were not scientists, but artists attempting to make a point, striving to serve as our moral conscience. "We're generating the future now in our art and giving people the chance to make decisions before the services actually become available," said Mihail.

At the time I met Kim-Trang and Mikhail, I was chairing the ELSI advisory committee to the Human Genome Project. The HGP was providing grants totaling 3-5% of its budget to economists, philosophers, anthropologists, law professors, sociologist, physicians, molecular biologists and others to anticipate the social issues that would arise with genetics. But for decades, artists, novelists, and poets had already begun exploring these issues in greater depth than any short-term ELSI grant could allow.

Beyond assessing the complex and often surprising impact of genetic technologies, novels and art works can provoke discussion. When people read about a genetic development in Science or even The New York Times, they are often reluctant to challenge what they read. They think their lack of a Ph.D. in molecular biology makes their comments irrelevant. In contrast, people feel comfortable addressing the same issues when they are presented in a novel or a work of art. Artist Bradley Rubinstein creates digital photos showing children whose eyes have been digitally replaced with dog eyes, giving people a starting point for an intensive discussion of the morality and advisability of genetic enhancement.

Nancy Kress' novel, Beggars in Spain, allows people to understand the social context in which genetic enhancement would occur. Kress anticipates what society would look like if some children were genetically engineered not to need sleep. Unlike a university press release or biotech company annual report extolling the virtues of such a development, her book analyzes what might happen, given human emotions, social stratification, and the economics of access to technologies. As might be predicted, the "enhanced" children in the novel learn much faster and ultimately attain better jobs, making other people jealous of them. "Normal" people begin to sell items from factories with the We Sleep logo, even when the products are shoddier than those the genetically-engineered people create. (Shades of "Buy American.") But the people who don't sleep are also jealous of those who do-and take drugs to have the chance to dream.

The arts not only transform us individually, but they also transform us socially. Literature, paintings, photographs, and poems have documented social injustices and challenged and sometimes changed the social structure. Following Dorothea Lange's publication of one of her photos, "Migrant Mother," in the San Francisco News, the U.S. government allocated $200,000 to establish a migrant camp for homeless workers. Upton Sinclair's novel The Jungle provided a disturbing indictment of the meat-packing industry, leading to the passage of both the Pure Food & Drug Act and the Meat Inspection Act.

In my own work, I've begun to explore how to weave popular culture into public policy debates. As a midterm project in my classes on genetics policy at Princeton and at Chicago-Kent College of Law, I've asked students to read a science fiction book of their choice dealing with genetics. Their assignment was to analyze how close we were to using the technology at issue in the book; to assess the impacts of the technology on individuals, families, society, and the legal system; and to determine whether the problems raised in the book could be handled by existing laws or whether new laws were needed.

The students were surprised at how quickly science fiction had become science fact (or at least science hype) with one or more actual doctors or companies doing research on or offering the technology that had been described in each science fiction book. And the students found creative ways to use existing laws to handle some of the problems, which we then applied in actual pro bono legal cases.

Since novels seemed to provide a way to stimulate discussion of genetics issues, four years ago I began writing a series of mysteries with a geneticist main character, Dr. Alexandra Blake. I chose to write about issues that are here and now, rather than writing science fiction. In the first novel, Sequence (2006), I addressed issues of genetic privacy. A Navy lieutenant is asked to provide DNA when a murder occurs in a naval base library. He refuses, even though he is innocent, because he is gay and is concerned that the Navy might test his DNA for the alleged "gay gene."

In Sequence (2006), I also wrote about a government official who tried to personally profit by selling to a biotech company the tissue samples that were part of the Armed Services DNA bank. After the book was published, the U.S. Congress began investigating a government official who had personally profited from providing tissue samples to a pharmaceutical company. Those samples had been collected by other researchers who had convinced Alzheimer's patients and healthy volunteers to provide tissue samples, including spinal fluid collected through a spinal tap so that they might find biological markers associated with Alzheimer's and develop a cure.

When one of the other researchers went to the freezer to get the samples for research, Dr. Trey Sunderland, the chief of NIMH's Geriatric Psychiatry Branch, told her that the samples had been destroyed when a freezer malfunctioned. In actuality, Dr. Sunderland had provided the pharmaceutical company Pfizer with over 3000 tissue samples and associated clinical data. Pfizer paid Dr. Sunderland about $285,000 for supposed consulting fees and approximately $311,000 for lectures and travel expenses. He was ultimately indicted and pled guilty.

In my latest mystery, Immunity (2008), I point out problems with the regulation of human research, but I also take on some of the concerns with criminal DNA databases. One of the suspects in the book is Native American, but traditional forensic databases do not contain a wide enough selection of Native Americans in the population database to indicate whether a certain allele is rare or common. The fact that a suspect's DNA matches at 9 or 13 loci doesn't mean much if many other Native Americans have that exact same genetic profile at those alleles.

My intention in writing mysteries was to smuggle in a few policy issues within a traditional thriller. But I hadn't anticipated that my fiction would inform my legal work. Some of my legal projects were inspired by research I undertook for the novels-on the problems of regulating research on monoclonal antibodies and the potential use of mandatory quarantine for a pandemic. Exploring genetics in fiction has also given me a new view on the ethical issues I routinely handle in my legal work. In Sequence, the protagonist surreptitiously tests her boyfriend's DNA to see if he's the killer. I'd fight against that in real life, but writing her character made me see how easily a person could be pulled into a seemingly unethical action.

Fiction and art can help expand the discussion of genetic policy issues to a larger audience. They can empower readers and viewers to discuss the pros and cons of genetic technologies. By portraying the larger social context in which technologies are adopted and addressing who loses and who benefits, they can also help chart the appropriate regulation of genetics.

Lori Andrews is a mystery writer and professor of law, Chicago-Kent College of Law.

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